|
Emotions run rampant when hearing that our child has
MCAD (or any of the FODs). We may have experienced feelings such
as disbelief, denial, anger, fear, confusion, emptiness, and anxiety.
One emotion that we often experience when told that our child
has a hereditary disorder is guilt. It can be especially intense
if a child (children) dies because MCAD was not detected early enough
or if it wasn't detected at all. Unfortunately, many of us have
learned about MCAD only after reading lots of articles, talking
with experts, and having autopsy tissues reexamined.
Guilt does not 'discriminate' ~ all of us with MCAD
children, living or deceased, most likely have experienced this
common and pervasive emotion to varying degrees. There are various
causes for guilt, but the focus of this piece will be on guilt
due to the feeling that we are responsible for our child (children)
acquiring MCAD, that we have failed him or her, and that he or she
may have died because we didn't fulfill our parental duty, albeit
unrealistic, of protecting our child from harm at all times.
Even though intellectually we know we cannot control
everything, we still feel we should have prevented our child (children)
from acquiring MCAD and/or prevented our child's death from occurring.
Guilt feelings arise because of the discrepancy between what
we think we SHOULD be able to do and control and what we ACTUALLY
can control and achieve as parents.
In order to deal with these guilt feelings, some may
have turned to self-destructive behaviors such as excessive drinking
and/or the use of drugs in order to drown or avoid feelings. Processing
and coping with guilt takes a great deal of energy and using
negative strategies may actually delay guilt reactions and 'resolution'
of those feelings, as well as delay/complicate the entire grief
process.
More positive strategies include confronting and admitting
to yourself your feelings of guilt, sharing with your family and
friends your feelings of responsibility for your child acquiring
a genetic deficiency, learning more about guilt reactions and discovering
how normal they are, and trying to forgive yourself for not being
perfect. Unfortunately, all those should, ought, and must
statements we (and sometimes society) tell ourselves quickly trigger
our feelings of guilt.
Confronting and admitting that your guilt feelings
exist is helpful in acknowledging the reality of the situation.
Of course, this does not happen overnight and it takes ALOT of emotional
and psychological work. In order to cope with the negative feelings,
we can try to think of them in a more positive light by the using
reality testing. For example, as soon as we heard the MCAD diagnosis,
we may have had thoughts such as "Maybe we shouldn't have had children
in the first place, look what happened." But once we carefully examine
our reasons for having children in the first place (i.e. as an extension
or our love, etc.), we can focus on our decision in a more positive
manner. Hindsight is always 20/20 ~ we've probably all heard that
more than we can count, but when the decision to have children is
made, realistically we are going on the information we have at the
time and we most likely felt it was the right thing to do.
For those of us who have continued our families
after a child's (children) death and now armed with the knowledge
of MCAD, guilt feelings about passing the gene on may still
be present, but may be somewhat temporarily overshadowed by the
feelings of fear and anxiety of what lies ahead if another child
is diagnosed with MCAD. These feelings must also be confronted
and dealt with. ('Coping with stress' is discussed in a separate
article on this site).
The main point, though, is that guilt is very common
and very pervasive. It can ebb and flow over time and in order
to cope with these feelings, we first must confront and admit
that these feelings exist. In many cases, moving through guilt
can evoke other intense feelings that must be dealt with in order
to have some sense of 'healing.' Hopefully there is someone that
you feel comfortable with sharing those intense emotions, but if
there isn't then maybe seeking professional help would benefit you,
so guilt and other unresolved emotions don't keep you 'locked'
or 'stuck' in your process.
Another way of coping with guilt is by changing
our irrational beliefs of "I must be a perfect parent", "I should
have known about MCAD", and "If I was doing my job as a parent,
this shouldn't have happened." Again, once we examine how unrealistic
these statements are, we can put them in perspective.
We, as parents, are so hard on ourselves and we
may have to learn how to forgive ourselves (which is much easier
said than done) for not being 'perfect and all-knowing.' Forgiving
ourselves is often very difficult to do, especially when just thinking
about it. Writing your thoughts down in a journal may be
helpful in that you have something tangible to read and you can
better see some changes when you look back at earlier entries. Those
of us who have had a child die may have used this suggestion in
order to release our feelings, lower their intensity over time,
and to understand our beliefs and feelings in a more realistic manner.
Although it will not bring our other children back,
we are probably thankful that we now at least know about MCAD and
we can try and be positive about our present and future MCAD children.
Their lives are not doomed for death. Yes, there is stress
involved with the everyday medications, making sure they eat, and
when they get sick, but the positive prognosis for a 'normal' lifespan
is very encouraging. Focusing on what we CAN do in the here and
now may lessen the intensity of feeling guilty about passing
the gene on to our child.
Lastly, reaching out to other MCAD families can
be a way of discovering that we are not alone in our feelings
of guilt as well as a myriad of other emotions. Of course, doctors
that specialize in inherited metabolic disorders are familiar with
the medical aspects of MCAD, and hopefully your family physicians
are becoming better educated about how to deal with your child's
circumstances, but we, as parents, are the ones who are dealing
with the day-to-day practical and emotional situations. It may
be comforting and encouraging if we can communicate with one another
to pass along helpful suggestions on how to deal with certain issues.
Expression and communication of those feelings are important aspects
of dealing with life issues. We hope that this newsletter and
website will spark not only communication within your own families,
but with families across the country and the world!
Deb Lee Gould, Director, FOD Family Support Group
Note: This article appeared in the very first
issue of the MCAD Communication Network, Volume 1 Issue 1, February
1991. Since that time, the Support Group and Newsletter have expanded
from MCAD to include all of the Fatty Oxidation Disorders.
|
